At this past weekend’s Sports and Recreation Expo held at Helen Hayes Hospital, there were a number of vendors there with wheelchairs, vehicles, sports equipment and other information and resources. It was a great combination of products and services for people with spinal cord injuries and lots of other disabilities. Some of the vendors provide equipment that would be considered “medically necessary” like wheelchairs and lift systems if a person cannot transfer him or herself. I consider driving a neccessity, but that is my own opinion. In the eyes of the funders or government systems, it is quite difficult and time consuming to get funds to either purchase a vehicle or have it modified with hand controls and other adaptive equipment. Then there’s all the “extra” kinds of equipment that are definitely not covered by insurance or other programs, but have the potential of providing exercise, recreation and social activities. That’s what I’ll focus on here today. (I do acknowledge and understand that there are many other financial challenges as well. I do not mean to neglect them, but just focusing on one area today.)

One of our Push to Walk clients attended the Expo and saw some really cool stuff. After mentioning how he’d love to have one of the things he saw, he quickly acknowledged that the price tag was beyond his means. First, it seems like “stuff” for people with disabilities is just so darn expensive. As soon as something is described as helping people with disabilities, the price tag goes up considerably. For people that are handy and creative, they often build or rig something up for themselves that works just as good if not better than a product they could buy. This happens way too often, and it upsets me. I don’t know the business of manufacturing and distribution, but I do know equipment is very expensive and customer service is lacking in many, many companies who provide products to people with disabilities.

For sports and recreation equipment, there are a few resources that are worth checking out for individuals who want to buy their own stuff. I know there are requirements and guidelines for applying, but with persistence and some hard work, you might just find funding to help you. Check out the Travis Roy Foundation (www.travisroyfoundation.org), the Kelly Brush Foundation (www.kellybrushfoundation.org), The Challenged Athletes Foundation (www.challengedathletesfoundation.org) and Freedom on Wings of Sport (www.wingsofsport.com). Maybe one of these will fit your needs and you can apply for funding. Also HelpHOPELive, formerly NTAF (www.helphopelive.org) can help you set up a fundraising plan to assist you in your efforts.

While these approaches may be time consuming and tricky to navigate, it might be worthwhile in the long run. Check them out so you can go out there and have some fun. Let me know how it goes. I’ll be waiting to hear from you!

Webster’s Dictionary (yes, the actual book; I still use one of those!) defines the word “persist” as “to continue firmly and steadfastly despite obstacles.”

In my experience with everything related to spinal cord injuries for almost 8 years now, it seems like persistence is needed in almost every area of everyday life. Whether it’s related to health care, necessary equipment or activities, it seems to take persistence for anything to happen at all. And for things to happen smoothly – well, that takes extra doses of persistence, for sure!

I myself have needed to advocate for proper medical care for Darren, helped him with his benefits (waivers, Medicaid, Medicare, Social Security, etc), contacted vendors for equipment and assisted him in obtaining his driver’s license. Now, he is doing more of these things on his own, but in the beginning, I did a lot for him. From my point of view, the most difficult areas seemed to be the most important. Why is it SO hard to get a wheelchair? The process is very frustrating, maddening at times, and SOOOO slow. This is what people rely on, every single day. And yet it takes months and months, if not a full year or more, to go through the entire process. Who is in control? Who cares? Persistence pays off (sometimes); but I find myself balancing on a thin tight-rope between being persistent and downright mean to the person who seems to be holding up the process. UGH!

Another area where persistence seems to be key is with driving. The difficulty in scheduling adaptive driving lessons, figuring out the proper equipment that is needed, finding/ordering/buying a suitable vehicle, and then having everything come together so you can actually take the driving test and get your license – I feel exhausted when our Push to Walk clients just tell me what they go through. If they weren’t persistent, the process would take even longer or they would give up.

But that is the good part of the story – our clients DON’T give up! They persist, they persevere and they accomplish things! They get their new wheelchairs, they start driving, they travel, they do fun things. None of it is easy; none of it is fun. But they all do what is needed so they can reach their goals. They overcome obstacles day in and day out, and accomplish things many people told them they wouldn’t. Our Push to Walk clients personify the word persistence in their daily lifes and I am so proud of them!

If you have a good story of how persistence helped you accomplish something in your life – big or small – let me know!

P.S. For all you locals who live near Push to Walk – come to Chili’s on Route 23 in Riverdale on Thursday, April 19. Chili’s will donate 10% of all sales all day tomorrow to Push to Walk – eat in OR take out! Please be sure to have a coupon with you (we have them at Push to Walk or I can e-mail you one, just let me know) or ask your server. Thanks! Your support is appreciated!

OK, sometimes I get on my “soap box” about certian topics, and driving is one of them. The next post will be another – standing frames!

Because of my own particular situation of having a son that was 18 at the time of his injury, driving was one of the things he wanted to figure out ASAP. Also, because Darren had been very independent prior to his injury, his personality did not change after the fact. So we had to start thinking about a vehicle and driving as soon as he was able to handle it from a strength standpoint.

Again, this is my own experience, and I know a lot of people with SCI don’t have the financial resources to do what we did. I understand that. We were able to purchase an accessible vehicle, and that made a huge difference. Darren was so anxious to get out and about, and he was so tired of asking for rides here and there, I knew he would do so much more if he could drive on his own.

While a van was not the vehicle of choice for a hip 19 year old, Darren realized it offered the most for his situation. From the beginning to now, there have been a few phases of Darren’s driving:

At first, he drove from his power chair (which he used all of the time) with an easy lock mechanism to lock into place. When he started using his manual wheelchair more often, he actually transferred from his manual chair into the power chair and drove from that. Then we purchased a 6 way power base driver seat, which moves back and forth, up and down and swivels side to side. He transfers into that, and drives from the driver’s seat. He finds it very comfortable, especially for the long drives he takes (more on that in a future blog, possibly!).

All of this points to what driving has afforded Darren – more independence. Of course, I still worry about him driving too late at night, in bad weather conditions, or in areas he’s unfamiliar with. But all parents worry about those things; we just worry more when there are extenuating circumstances like an SCI. I don’t mean to say I don’t.

It all takes SO much time – driving lessons, prescriptions for the correct adaptable equipment, ordering a vehicle, learning to drive it, etc. Sometimes people get so frustrated with the process, that they never take on the challenge of starting to drive. I encourage all of you to seek help in fund raising to help purchase a vehicle, to take the initiative with Vocational Rehab programs, to figure out all that it takes to help someone with an SCI drive again. It is well worth the effort and can provide so much independence and freedom to all those involved.

Let me know if you have any questions and maybe I can provide some insights to help you!